Allow the NHS to give Abi Longfellow her life-saving medicine
This petition had 208,021 supporters
Our daughter, twelve-year-old Abi, has a rare kidney disease that could kill her in five years.
Under lock and key in the hospital where she is treated is the medicine that could save her life.
But thanks to a cruel loophole, doctors are forbidden from giving it to our daughter. That’s why we’ve started a campaign with the Sunday People.
Abi’s one-in-a-million illness is too rare to be covered by NHS England’s drug funding policy but not rare enough to unlock cash for exceptional cases.
And the manufacturer Alexion Pharmaceuticals has refused to drop the eye-watering £136,000-a-year price, making it impossible for us to buy the drug privately.
Knowing that the drug sits in the hospital but Abi can’t have it is horrendous. In a couple years’ time it will be as cheap as a packet of paracetamol but it will be too late for Abi. We know the drug is there that could help Abi and it is used in other countries. It’s torture to know that her life could be saved but we can’t afford to save it. We’re calling on Alexion and the UK Government to give Abi’s life a chance.
Abi even wrote a heartfelt letter to Prime Minister David Cameron, saying: "Why is that fair when other children with other rare kidney diseases like me are receiving it?
"I’m a 12-year old English girl and if I lived in Ireland, Europe, America, Canada etc I would get the medicine without hesitation.
"So I want to know why am I being disadvantaged in my own country?"
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